The Zika epidemic has brought microcephaly into popular view. Has the public's treatment of the condition changed?
Over the course of a little over a year, the Zika virus has spread to over 60 countries and territories in the Americas, the Caribbean, and southeast Asia.
Transferred through infected mosquitoes and sexual intercourse, there currently exists no vaccine or medicine to prevent or treat Zika — a fact which, before the striking numbers of infants born with microcephaly in Zika-infected areas, has health experts worried.
According to the Centers for Disease Control and Prevention (CDC), microcephaly is a birth defect where the affected baby has a “smaller than expected” head and brain, the latter of which may not have developed properly while in utero.
In April 2016, CDC scientists concluded that Zika is indeed a cause of microcephaly — which has hit the nation of Brazil particularly hard. As of April 2016, the Brazilian Health Ministry reported nearly 5,000 confirmed and suspected microcephaly cases in the country, which according to official data has disproportionately impacted poor Brazilian populations.
Often lacking the financial means or physical infrastructure to get the support they need in rearing their child, these families face a wide array of challenges when it comes to providing for their children’s unique health needs. Still, some have said that the greatest obstacle of all is the prejudice they encounter.
For instance, the Alves family in Pernambuco state — which has seen a quarter of the confirmed and suspected cases of microcephaly this year — told Al Jazeera America that parents sometimes forbid their kids from playing with their son, Davi, out of fear that he might “give” them microcephaly.
That others might discriminate against an individual with a physical deformity is sadly not that surprising. After all, the stigmatization and “otherizing” of those with microcephaly, and physical disability writ large has a rich history.
Microcephaly and the Circus
At the tail end of the 19th century, a boy named Simon Metz was born to a wealthy family in Santa Fe, New Mexico. While concrete details about Metz’ life are scarce, many believe that Metz and his sister Athelia had microcephaly.
Embarrassed by their children’s disfigurement, the story goes that Metz’s parents hid the children in the attic for several years until they could pawn them off on the traveling circus — a relatively common event at the time.
Soon enough, Metz went by “Schlitzie,” and worked for everyone from the Ringling Brothers to P.T. Barnum. Throughout his decades-long career, Metz — who had the IQ of a three-to-four-year old — would work as “the Monkey Girl,” “the Missing Link,” “the Last of the Incas, and appear in films such as The Sideshow, Freaks, and Meet Boston Blackie.
Crowds adored Metz, though it wasn’t because his condition made him seem “new.”
During the 19th century, the Ringling Brothers Circus featured their own “pinheads” and “rat people,” popular nicknames for those with the microcephaly. For his part, in 1860, P.T. Barnum recruited 18-year-old William Henry Johnson, who had microcephaly and was born to newly-freed slaves in New Jersey.
Barnum transformed Johnson into “Zip,” who he described as “a different race of human found during a gorilla trekking expedition near the Gambia River in western Africa.” At the time, Charles Darwin had just published On the Origin of the Species and Barnum seized the opportunity Darwin presented by displaying Johnson as the “missing link.”
In order to achieve that look, Barnum had Johnson’s head shaved to draw attention to its shape, and kept him in a cage where he demanded that Johnson never speak, only grunt. Johnson’s acquiescence paid off: he began making hundreds of dollars a week for his performances, and eventually retired a millionaire.
While some of these sideshow actors were able to eke out a fairly profitable existence due to their appearance, scholars are quick to note that racism often fueled it.
As disability studies professor Rosemarie Garland-Thomson writes in her book Freakery: Cultural Spectacles of the Extraordinary Body, “Using imagery and symbols managers knew the public would respond to, they created a public identity for the person that was being exhibited that would have the widest appeal, and thereby would collect the most dimes.”
This, as evidenced in the cases of Aztec warrior “Schlitzie” and African humanoid “Zip,” often meant drawing upon race to demarcate the difference between the “freaks” and the “normal,” the former being those darker and of different geographic origin than “normal” sideshow spectators.
Indeed, as disability studies scholar Robert Bogdan writes, “what made them ‘freaks’ was the racist presentations of them and their culture by promoters’.”
“Freaks” in the 20th and 21st century
Garland-Thomson writes that freak shows met their end at around 1940, when “technological and geographic changes, competition from other forms of entertainment, the medicalization of human differences, and changed public taste resulted in a serious decline in the number and popularity of freak shows.”
Still, while we have physically abandoned the circus freak show, disability studies experts have argued that the ways in which we speak about those with disabilities continue to draw from the problematic legacy of circus sideshow acts.
With regards to microcephaly and the Zika epidemic, for instance, disability-rights scholar Martina Shabram notes in Quartz that the “freak show” has been translated to digital media.
“Many of the most widely-circulated photographs of babies with microcephaly follow a familiar pattern,” Shabram writes:
“In these images, the baby faces the camera but does not meet its gaze. This position invites viewers to look closely the child’s skull, the light playing upon a baby’s abnormal craters and ridges. The framing encourages viewers to treat the child as a curiosity. The parent is often cropped out of the frame; we see only their hands and lap, cradling the baby, revealing nothing about him or her as a person. All we know is that they have brown skin and their babies — often fairer — are sick.”
This presentation, she says, demonstrates our historically-held “fascination with bodies that deviate from the norm.” When viewed in such an isolated form, Shabram adds that the photos offer viewers a form of psychological relief: since these babies are “different” from us entirely, presented as far-removed from “normal” human life, we are not at risk of becoming one.
So how to stop the perpetuation of the freak show and all of the stigma it engenders? To Shabram, borrowing from Garland-Thomson’s phrasing, we should “rescript the story.”
Indeed, Shabram writes, we must be “mindful of the histories of discrimination that inform our perceptions of disabilities. And we should work to expand both our resources and our mindsets, so that people who are born with disabilities have the chance to live good lives.”
After learning about the history of microcephaly , read about the sad lives of the Ringling Brothers’ freak show acts, and the tale of the conjoined Hilton sisters.